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Advice for status migraines?

New user here--hi!

Background: Within the past few months, I've developed status migraines, although I'm starting to suspect that I've actually had them before but ignored them along with my regular migraines (which I've had for as Lon as I can remember) Now I'm looking for answers, but I feel I've hit a dead end with my neurologist. On the one hand, they made it sound like it was a medical emergency and they gave me a huge lecture when I finally got an appointment, but on the other they couldn't see me or even bother to call and tell me to go to the ER until I was at least a week into the migraine. I didn't find out until after the migraine finally broke that my neurologist was considering putting me into a coma to avoid brain damage if the migraine had gone on any longer.

I really need to know how serious these migraines are, but everything I've found online so far has been fairly vague, just like my neurologist. Most sites note increased risk of stroke, but I can't come upon any hard figures or studies relating to this. I can't find anything online about the potential for brain damage that my neurologist was talking about, unless she meant brain damage relating to stroke.

I'm at my wits end here. I have missed so much school. Can I afford to miss more school? Or are these migraines really life threatening? Any resources and info about these status migraines would be much appreciated

  1. Hi annaB,

    It's true if intractable headache lasts longer than 72 hours, it can increase our risk of status migrainous and stroke. I've been in status on a number of occasions and have been treated with IV infusions and/or a steroid dose pack. You can read more about that in this link; https://migraine.com/blog/what-is-status-migrainosus/. I've not heard of putting someone into a coma to treat status migrainous, but do know patients who have been hospitalized for a few days to received IV treatment to break the cycle.

    I wonder if it's time to find a different doctor who is more knowledgeable about migraine and how to treat it. However, I know looking for a new doctor can be a daunting experience. Let me share with you information that may help; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.

    As far as brain damage goes, white matter lesions can be seen in people who have migraine for an extended period of time. At this point research indicates these lesions don't appear to be harmful. On the other hand women who have migraine with aura are at an increased risk for stroke. A recent study in 2013 showed a woman's risk was "4.3 per 1,000 per year." You can read more about migraine and stroke in this article; https://migraine.com/blog/migraine-aura-medication-stroke-assessing-risk/. For even more information, take a look at this interview by Dr. Richard Lipton, a world class migraine expert; http://www.npr.org/blogs/health/2013/08/29/216818981/brain-changes-may-explain-stroke-risk-in-migraine-sufferers.

    Does that help?
    Nancy

    1. I think the mods advice about another specialist is valid. At least have someone give you a 2nd opinion.

      Ive heard of induced coma re statis but its radical and life threatening as well if it means intubation.

      Personally I go to the ER right away anymore if the abortive then rescue isnt working. It takes some real self awareness to admit that. I've found when the give me dilaudid, steroid IV, and 2-3L of fluid it disrupts the HA and if lucky I get 3-4 days breakthrough pain free (not to be confused with pain free or HA free).

      My HA can last 96 hrs with treatment so difficult to treat.

      I've also had to cut way back on school. If you haven't already register with your campus disability services. Itll help you in regards to late assignments and alternative testing.

      Good luck

      1. Maybe it depends on how severe the status migraine is. I have had a constant migraine for the past three years and my neurologist has never talked about putting me in a coma. I usually run about a 6/10 on a typical day on prophylactics. Since she is the top neurologist in B.C. I think she's pretty qualified to make that decision.

        I have migraines without aura and I rarely throw up though I do get nauseous occasionally.

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